ADA Live! Episode 90: How Public Health Monitoring During the Pandemic Can Affect Disability and Minority Populations Broadcast Date: February 3, 2021 Speakers: Lydia X.Z. Brown & Ridhi Shetty, Center for Democracy & Technology; Paul Harpur, the University of Queensland Host: Dr. Peter Blanck, University Professor at Syracuse University and BBI chairman Lydia Brown: Hi, I'm Lydia Brown. Ridhi Shetty: Hi, I'm Ridhi Shetty. Paul Harpur: I'm Paul Harpur and you're listening to ADA Live. 4 Wheel City: (rapping) Yo. All right, let's roll. Let's go. Barry Whaley: Hi, everybody. On behalf of the Southeast ADA Center, the Burton Blatt Institute at Syracuse University and the ADA National Network, I want to welcome you to ADA Live. I'm Barry Whaley. I'm the director of the Southeast ADA Center. As a reminder, listening audience, if you have questions about the ADA, you can use the online form at ADAlive.org. Marginalized communities including people with disabilities, minority populations, and people who identify as LGBTIQ+ have been the hardest hard by the COVID-19 pandemic, and historically are often the least protected from public monitoring and data outreach. 1 Transcript Episode 90: How Public Health Monitoring During the Pandemic Can Affect Disability and Minority Populations To understand the effects of COVID-19 on society and the role of technology in responding to COVID-19, the Social Science Research Council, the SSRC, a United States based international non-profit organization advancing research in social sciences and related disciplines, with support from the MacArthur and the Ford Foundation, established the Just Tech COVID-19 Rapid Response grant. We are fortunate today to have as our guests two recipients of the COVID-19 rapid response grant. Our colleague Dr. Paul Harpur at University of Queensland in Australia and international distinguished fellow at the Burton Blatt Institute and our boss, Dr. Peter Blanck, university professor and chairman at the Burton Blatt Institute at Syracuse University. Also joining them are Lydia Brown and Ridhi Shetty of the Center for Democracy and Technology, who'll discuss critical questions and provide a framework for technological solutions to pressing issues like remote education and public health policy. The grant project will focus on the unequal impact of social and political power on marginalized communities including people with disabilities and minority populations. So welcome everybody to ADA Live and as always, Peter, it's my pleasure to turn it over to you. Peter Blanck: Thank you, Barry and welcome, Paul, Lydia, Ridhi. It's really great to be with three important thought leaders today who are having real world effects at the grassroots level at a time in which we are living in a pandemic, COVID-19 pandemic, which is changing the way we all live and work and creating new norms about social, economic and civic activities that we all took for granted in many ways prior to the pandemic. Paul, Lydia and Ridhi, each are working at different aspects of ensuring social inclusion, civic participation, fair and equal participation under anti-discrimination laws, such as the laws in Australia or here in the United States under the Americans with Disabilities Act. So welcome to you all and I would start with Paul please. 2 Transcript Episode 90: How Public Health Monitoring During the Pandemic Can Affect Disability and Minority Populations Tell us a little bit, Paul from down under, you have just received this social science research council grant which is focusing on technology and responses, rapid responses to the COVID-19 pandemic. In what ways are you focusing your research and shaping your response from a technology and other point of view to the COVID-19 pandemic? Paul Harpur: Well, thank you, Peter. What we have been looking at is how the COVID-19 health surveillance and technological interventions are impacting on our marginalized groups such as persons with disabilities, people with LGBTQI2+ and other minority groups. These groups are the hardest hit by the virus, at the same time, the least protected by surveillance over reach by technology. So the unprecedented health, social, economics challenges created by the pandemic require analysis backwards retrospectively and also considering how can we protect these groups. We have four overarching research questions, in this, looking at how has COVID-19 impacted, how it's altered existing social norms, regarding health surveillance in public spaces, how these new norms are creating new sites of disablement and whether people that are now essentially disabled by these new systems who previously weren't, whether they are interested in claiming the mental disability. You see that a lot with older people who don't identify as having a disability even though they could claim it in lots of situations. Finally, we're looking at how the changes brought about by the COVID-19, how norms in society will shift, how minority groups are seen by other groups. Peter Blanck: Well, thank you, Paul. I wanted to dig deeper a bit, in a little bit on those important topics. But first, I wanted to turn to and introduce the very important work being done by Lydia and Ridhi at the Center for Democracy and technology. Like you, they are working at the leading edge of issues facing marginalized groups particularly in the area of democracy and technology. They focus very much on online algorithms driven programs, whether it's in hiring or applications to universities or in receipt of social benefits. Thank you, Lydia and Ridhi for participating and I turn to you both as a team to explain please a little bit about your important work and how it also dovetails at a time of great trauma under the pandemic. 3 Transcript Episode 90: How Public Health Monitoring During the Pandemic Can Affect Disability and Minority Populations Lydia Brown: Thank you so much for having us, Peter. This is Lydia. Our work came out of a recognition that in the disability community, many advocates are not necessarily focused on issues caused by algorithmic or artificial intelligence based discrimination and at the same time, our communities are uniquely and particularly vulnerable to discrimination and negative disparate impact caused by algorithmic discrimination. Likewise, the folks who are working in tech spaces often are not approaching their work with an understanding of disability, of the disabled community's priorities or experiences, or bringing a disability rights or disability justice perspective to the work that they're doing. And while, in the last several years, there's been incredibly important conversation about algorithmic discrimination along other axes of marginalization especially around race and around gender, there hasn't been as much conversation about the impact on disabled people and particularly disabled people who live at the intersections of multiple forms of marginality, disabled people of color, disabled women, disabled queer and trans people, all of whom may face forms of hidden discrimination masked by code that affects our lives in untold ways in every aspect whether from the benefits that disabled people often rely upon to the ability to get hired for a job and to the ability to receive quality competent and respectful health care. Ridhi Shetty: This is Ridhi. Just to add to what Lydia just described, we're seeing all these issues just being further exacerbated at this time. All the ways that we normally see algorithms being used, they're being relied upon that much more heavily now, when it seems that other options are far less available. They're perceived as a good substitute or replacement for a lot of the in-person processes that would otherwise be handled, but right now, they're actually exacerbating a lot of the disparities that were already existing before the pandemic. As Lydia mentioned, these already existed along multiple axes and despite this perception that they are improving processes, they're actually really not. 4 Transcript Episode 90: How Public Health Monitoring During the Pandemic Can Affect Disability and Minority Populations Peter Blanck: Thank you, Lydia and Ridhi. That's really important and fascinating work. Have you heard of or seen without saying names actual cases of discrimination or instances of discrimination in this regard, since you've written that report or prior? Ridhi Shetty: I'll just start with in particular over the past year, when it comes to benefits determinations, I think the disparity has not necessarily been specifically in the way that the determinations have been made, but in how heavily they're being relied upon and the delays that are being worsened because of staffing issues and that increased reliance on these tools. It's not just the algorithm themselves and the kind of determination that they make, but how much the entire system is really relying on them. Peter Blanck: Lydia, would you add to that? Lydia Brown: I can just talk a little bit about what this feels like in real time. In just the last few months at different points, I've been part of conversations with other disabled people who talked about not being able to be hired because they think that employers' applications requiring them to complete personality tests resulted in not being able to get hired anywhere. I was just recently part of a conversation where several dozen people shared similar stories, one after the other, where all of whom were disabled people of color who had gone up against job applications that required them to complete some kind of personality test to proceed in the application. And in all of the cases, not a single person was able to get hired.